By LL

Due to personal experience and having followed several other people's posts on these forums where patients are left struggling to find answers, get appointments and generally having to chase things up themselves which is very stressful on top of having to undergo treatment and cope with a cancer diagnosis I thought I would make this post.

As I say, I have had several personal experiences where I have "slipped through the net" and I also work in administration in a large NHS hospital and have seen first hand examples of patients falling through the system. I hope the following tips which I make purely through personal experience may be helpful, particularly to those at the early stages of wading through the hospital system.

Firstly, when you have an upcoming appointment, always make a list on paper of your questions and queries - you may think you know what you want to ask but when it comes to it you may be given a lot of other information and then you will find that your mind goes blank and you forget all or some of your questions - no doctors or nurse mind if you say that you have a list of questions and pull out a piece of paper! It is far better than walking out of the appointment only to remember the most important things you wanted to know but had forgotten to ask.

When attending appointments, don't be afraid to take a "partner" with you, albeit a friend, partner or family member. Again, you may be given a lot of information and a second pair of ears will always help you to recall things that you forget - don't let them be afraid to take a notepad and note down any names of procedures, drugs, etc etc so that you can research them at your own pace later.

Finally, and this is the most important part of this post - if you are told that you will have further treatments, appointments, scans etc - always ask when they are likely to occur and when you should receive a notification for that appointment. For example if you are told that you will need a scan - ask when you are likely to receive an appointment for that scan - they may say that you will receive an appointment within the next two weeks - then ask what the waiting list is for that scan (which will of course depend on the urgency they allocate to it) - they may say that you should have your scan done within six weeks. Note down the dates - if you don't receive an appointment within 2 1/2 weeks, then contact the scanning department to ensure they have received your referral. If your scan date is very far from that which you were led to believe it would be, then always query it, stating that you were told it would be within six weeks.

If you are put on a waiting list for a procedure - ask how long the expected wait should be. When it comes near to the time of that predicted wait, contact the relevant waiting list office and ask for an estimated date of procedure - this will not only ensure that they check you are on the waiting list but will also hopefullly give you a better idea of when it will be carried out.

As far as results go - never, ever assume that no news is good news!! You are entitled to be told of your results, even if they are “normal” or “no abnormality is found”. At the time of having scans, X-rays, biopsies etc, ask how long it will take before you will receive the results and how you will receive them. You may be told that the results will be available in two weeks and you will be sent another appointment to attend outpatients or you may be told that they will be sent to your GP or the hospital may contact you directly, usually by telephone or post. Take note of the time frames and if you are told that they will be available within a certain time but don't hear anything, then follow up the relevant department - this may be your hospital consultant, in which case call his secretary and say that you had expected either an appointment, letter or telephone call. You might find it easier to ask you GP to follow things up for you - they may have been copied in with results and, if not, can easily follow them up on your behalf.

If you are struggling with treatment or simply just the stress of it all, do not struggle on alone if you feel that things are not happening within the time frames that you were led to believe. Your best point of contact is usually your GP who should be able to do things for you. Consultant's secretaries, in my opinion, are of variable assistance - some are absolutely great, others less helpful but finally, don't hesitate to contact your hospital's PALS (Patient Advice and Liaison Service) liaison officer. Everyone assumes that they only deal with complaints -whilst they do deal with complaints they are also there to assist patients. They will probably put you in touch with the relevant person who can follow things up for you, either a specialist nurse or administration person, but let them take the strain for you.

I hope some of you may find this helpful. My main point is if things have dragged on longer that you had been expecting - follow it up and if you are not happy with the response you get, then follow it through!

I have put this together to ensure that no-one "falls out of the system" but, in my own experience, I have also found that by knowing these timelines it has helped me to keep in control of my treatment as I have never been left endlessly worrying (well, at least, not more than is normal) about when I might hear results or dates of appointments - because I have been given an idea of when that would be which is particularly helpful if you are waiting for less urgent appointments which can take some weeks to come through and saves the terror of waiting for the post to hit the mat each day - if you know that you aren't likely to receive news for about four weeks, then that is four weeks of less stress and four weeks in which you can continue to plan your normal daily life activities without worrying that you might have to attend an appointment!